Kicking LEs butt!! Exercise & Self Care Log
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Yesterday, walking with a huge basket I use to carry food outdoors, I stumbled over a toy my granddaughter had left in my path, but I could not see because of the basket. My LE arm landed with a thump on a countertop, leaving a small scrape and what feels like a big, hard, internal bump. No bruise, but the area is swollen--but JUST that area, not the entire arm or even any meaningful portion of it. So I think I'm looking at a normal response to a mini trauma to the arm. But--to humor the small swollen area, I put on my sleeve/gauntlet yesterday evening, and half a day today. Much improved! I think this too, shall pass.
Today was a great fitness day, as my trainer had me do lots of new resistance training moves, which were in fact quite fun, even if a bit of hard work. I finished my day with about 6 miles, lots of time in the gym, and just plain running around after little kids. And wearing comression most of the day made my arm feel much, much better.
Carol
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Hello all.
Noticed yesterday my left arm swelled after doing exercise, (was trying to do knee pushups, too much weight.)
I did MLD before bed and moved the fluid down the trunk.
My PT is a lymphedema specialist also. Should I push and ask for a sleeve for exercise?
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Just got home after an 11 hour trip from Florida. My only exercise today was walking around in rest areas for a very short period due to heat. Car thermometer registered 104 near Columbia, SC. Now to do MLD exercises and MLD again. Tomorrow is another day for REAL exercise.
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Becky, 104?! And humid too, right? Yikes! You gotta get an avatar without that sweatshirt...
Binney
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99 degrees here at peak temp today, and I stayed indoors much of the time. I have no clue how, but I got about 7,000 steps in, still running around a lot within the house getting things out, putting them away, playing with little ones, etc. This evening our town did fireworks and many of us went, which involved some walking, but the temp dropped all the way to 81, for a pleasant experience after all. Tomorrow I'll be in a pool for a good while and I'm sure looking forward to that!
Bottoms up everyone, because water is truly critical now!
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HEY, HUGZ, WHERE ARE YOU?! We need ya'!
Binney0 -
Checking in after a day of 7 hrs in car. Lots of stops to get out and walk. Brought a cooler and filled with healthy food I bought last night. Also have a case of bottled water. By dinner I had just under 7,000 steps. Did 4,000 steps on treadmill and walked around hotel to cool down. By the time I got in bed, pedometer read 12,436 steps! Lots of water, thorough MLD. I feel very good after a day on the road.
Carol, I am so grateful you mentioned your use of a pedometer. It really is an amazing thing. Guilt on a clip! (distant cousin to soap on a rope!) It really is a great motivator. All those extra steps add up!
By the way, I missed a chance to swim in a great indoor pool here at hotel. Almost packed suit but figured it wouldn't get used. Maybe in TN I can find a cheapo tee and shorts or some makeshift thing for return trip. I really love the water, especially when it isn't freezing. It rained so much in FL I never got to use pool. :-/0 -
Carol, Hope your arm is better today.
Impressive temperatures you got there. Controlling swelling and re-organizing all activities certainly becomes quite a challenge under such conditions. In scandinavian countries, they talk about a heat wave when temperatures have been above 25 degrees celcius (77 F) for 3 days in a row!
Eating my breakfast on the terrace, temperature 23 C (73 F); thinking about you all. My two lapish dogs have been shedding their undercoat but still have quite a thick fur and they are hot. Will take them to the nearby lake for a swim later in the afternoon.
Sending you some virtual coolness from Finland. Happy 4th July to everybody.
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Nitocris - I will take some of that cool air. It was 108 last week and supposed to be 104 tomorrow and I DON'T live in a desert. It's killing me. 70's sound heavenly. xo
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Nitocris - I will take some of that cool air. It was 108 last week and supposed to be 104 tomorrow and I DON'T live in a desert. It's killing me. 70's sound heavenly. xo
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Hi, this afternoon first peak at 25 degrees C (77 F). Let's see if this is going to start a "heat wave".
Carol, I bought a new pedometer and this one works. Went cycling to the nearest town and took my dogs for a swim in the nearby lake. Boy, were they in a hurry to take a dip... never walked so fast. So far, 7341 steps. (plus the steps of 4 pairs of paws walking at high speed...). Ready to join the Leslie Sansone's Walk Social network.
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I ordered the five mile walk from e-bay. Should arrive witin the next few days and I'll give it a try.
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Other than MLD and MLD exercises, unpacking and washing clothes I have not been motivated to move. I am getting ready to put on the Sasone DVD and do the 5 miles. If I put it down here I HAVE to do it. I am delaying weights until tomorrow.
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A new avatar without sweatshirt just for Binney! If these temps keep up the next one of me will be in a swimsuit or with no clothes at all!
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Becky, beautiful! Love your smile, and I'm feeling cooler already...
Binney0 -
Becky, I love the photo! Nitocris and Tina, wear those pedometers in good health. PTdreamers, I have a feeling you're going to like the Sansone DVD, especially since you can do it INDOORS in all this crazy heat! We got to 102 today. Binney, I do not know how you handle heat in that desert of yours! Walking out of the house, it feels like walking literally into a wall of heat. My family houseguests dwindled to 9 today, and we were able to spend much of the day in and out of a pool, which made it bearable. Sunscreen makers must be getting wealthy from my family's slather-fest!
My arm still hurts where I knocked it into my countertop, and it's still a bit tender and swollen right in that area, but so far, nothing worse--does not seem to have aggraved the LE, nor is swelling in my arm any worse than usual. Today I managed to cut my finger while cooking, so watching that now, too. Wow, having houseguests is sure a dangerous hobby when you have LE!
My step count was only about 4200 today, and I was truly not working very hard in the pool, but I suppose just paddling around kept me moving and I'm happy with that.
Have a cool Thursday, everyone.
Carol
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I am hibernating again today! I am going to do the Sansone again--5 mi. I wonder if the pedometer will work with it. I will try. I hope most people who have been without electricity the last week have theirs back on. I would have had to go somewhere else if mine had gone off.
Meeting up with Tina tomorrow. She is visiting friends in my area. Can't wait to meet a cyberbuddy.
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Nibbana,
I wrote this long post a while back, to answer some questions from women at risk of LE. So some of the comments talk about avoiding LE, but the information is just as valid for those of us who already have an LE diagnosis and want to build strength safely. If you have been working out in a gym using weights before your LE diagnosis, some of this is old news to you, but I hope what's 'new' will be of help.
Guidelines for cautious resistance training--designed especially to address LE risk--were developed as a product of an 18-month research trial called the PAL Trial (for Physical Activity and Lymphedema).
Here are some highlights, and I do recommend that you read the related journal articles--I'll put links at the end here.
--Start with very, very light weights and move up very, very slowly. I was lifting extensive weight prior to surgery, but when I returned to the gym afterward, I started with one pound dumbbells for my arms and other upper-body lifts. Talk about feeling silly...but LE is nothing to fool around with, so I gritted my teeth and decided who the heck cares what it looks like. Then I added weight slowly, meaning one pound per week, initially.
--Use dumbbells or other weights that are marked on them. Items such as soup cans are handy, but their weights are not standard, so they make it very difficult to know for sure you're adding to your lift load in small, measured increments. Also, for best form (and form matters, to avoid injuries, LE-related and otherwise), it's best to use dumbbells, for a better grip. One option is to purchase a set of power blocks that go as low as 1 lb. If you google it, you'll see what I'm talking about. That's what they're using in follow-up research being done by the PAL Trial researchers now.
--Resistance bands are not a safe way to do strength training if you have or are at risk of LE, because you cannot know exactly how much resistance you add or subtract when you alter your hand placement or move to a more resistant band. One key tenet of the PAL Protocol is that they determined that women have the least chance of triggering LE (or making it worse if they already have it) when weight is added slowly and progressively, in small measured increments. Resistance bands are tempting because they're inexpensive and easy to store, and if you travel, they go right along with you. But--they invite more LE risk than relying on measured increments from dumbbells.
--And then there are those body-weight exercises, like planks for our abs and pushups for the pectoralis area. By now you can predict what I'm going to say--not such a good idea for us, because--you guessed it--impossible to say how much added resistance you get when you alter your position to make the move harder.
--This is not to say you NEVER use resistance bands or do push-ups, and even Dr. Katie Schmitz, the lead PAL researcher, has said it's possible...eventually. The idea is to build significant strength using the (broken record here, sorry) slow, progressive method with dumbbells. Then--and seriously only when you have a good long track record of adding your weights slowly--might you begin to add some bodyweight work--and that only if all through your program so far, you never triggered any LE symptoms (ache, heaviness, tingly, and of course, swelling).
--Then there's the question of wearing compression while working out. Anyone who already has LE should be wearing a compression sleeve and hand compression (glove or gauntlet) while lifting weights, and probably while doing cardio work, too (because just raising your core body temp during cardio adds load to the lymphatic system, and then you add to the challenge by using arms for long, repetitive motion in some kinds of cardio work). The National Lymphedema Network says that whether to wear compression or not is a judgment call when you do not have LE--but are 'just' at risk (oh, and risk after SNB is not trivial--up to 17% for arm LE and much, much higher for breast LE if you had SNB and breast-conserving surgery, and especially if rads are thrown in). To make that decision, it's best to consult with a qualified LE therapist, generally a PT who is also a certified LE therapist, hopefully with the letters LANA after his/her name.
(I'm killing you with info here, I know, but LE rots and we do what we can to avoid it, or to minimize flare-ups when we do have it.)
It's a great idea to work out with a certified personal trainer at least a few times, and a trainer can request the actual PAL workout guidelines by going online here:
http://www.penncancer.org/physical-activity-and-lymphedema/receive-pal-intervention-materials/
I live in a rural part of w. Michigan and am nowhere near any gyms that offered PAL-compliant personal training, so I recruited support from two hospitals and brought one of the PAL researchers to town last December, for a one-day workshop she gave to a group of personal trainers and LE therapists. So now we have some good PAL training resources here. You could do that too, and if interested, I can get you started on how to make it happen.
To read the original PAL report explaining how strength training guidelines were developed for breast cancer survivors who have lymphedema:
http://www.lymphnet.org/pdfDocs/PAL_NEJM.pdf .
Then there is the PAL-Trial evaluation of weight-lifting risks to women at risk of lymphedema, available at: jama.ama-assn.org/content/earl...
Lead researcher Kathryn Schmitz wrote an article clarifying misconceptions about the PAL Trial results, which were poorly reported in the media when the study was released:
http://www.lymphnet.org/pdfDocs/Weight_LE_Misconception.pdf
The Livestrong program is great, definitely designed for cancer survivors, but their trainers get only a little background in the PAL guidelines. So at minimum, I hope you'll read the resources I linked here, so you'll know what to ask about and when to object if an unwitting trainer suggests a move that's not really good for you.
Do lift...but do lift intelligently! 40% of us will get LE after BC treatment, and the risk is particularly high during the 3 years post-treatment. Some lucky women in the 60% club can lift, push, pull, do pushups and yank on resistance bands and never get LE. No one knows why some get it, some don't. You cannot know if you're in the 40% or the 60%, but being careful to do smart weightlifting could help nudge you away from the group that gets this crazy condition.
Nibbana, good luck, especially getting your therapist to understand that there's more to fitness than cardio, and 'more' can be not only safe, but highly useful to those of us with LE.
Carol
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Becky, my pedometer is pretty much in sync with Leslie's mileage count. Have a great workout and especially enjoy your time with Tina! I hope she thought to bring her drawing portfolio, which she shared with me when we met, and they are really fabulous.
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Here's a question for the wisdom of the exercise group: I need to invest in a pretty good supply of sleeve/gauntlet combos, because in 2.5 weeks I'll be going on a 5-day river kayak/camping trip. We pack all our gear in the kayaks and camp in very primitive conditions, meaning no clean water. We drink river water using filter bottles and I can use some of that to wash, but it's not the same as having a commodius supply of wash and rinse water. Plus, I want to have multiples on hand in dry bags each day, so if I capsize (been known to happen!), I have several dry spares.
So...I am interested in this: http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Armsleeves/c133_134/p2810/Allegro-20-30mmHg-Armsleeve/Gauntlet-Combo---%2364/product_info.html
It's a sleeve/glove combo, and it's very inexpensive. I like the idea of sleeve/glove combo--less likely to lose that gauntlet somewhere in the pit of a pack or drybag.
Does anyone here have any experience with this item?
I've been experimenting with a sleeve by Compression Dynamics, out on my paddle board, but I think it's not giving me enough compression. Too bad, because the knit is quite open and it dries in a flash. So I've decided to use a regular sleeve and just know that if I get it wet and the sun's not nice and warm to dry it quickly, I'll be changing it out regularly as I get splashed or capsize.
Thanks, if anyone has tried this--I really appreciate any insights.
Carol
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Carol,
Thanks for all the information. Me and my LE therapist, who does all my PT care it turned out, go back and forth all the time. I'm have a more cautious risk management style, and she thinks I'm a little on the paranoid side.
I noticed my left arm bigger than my right after exercise. Not Professor Klump, but I noticed something. I also hike at high altitude, with heat and insects that you can't avoid. I can't be miles out in the backcountry and have something happen and have to hike out with an inflammed arm. My work has a lot of repetitve motion and heavy lifting. Just a lot of factors that have me really thinking about my level of risk management.
I'd rather just get an off the shelf sleeve for prevention during exercise or intense, repetitive activity.
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Hi Carol,
Back in Feb 2011, I beta-tested the allegra SLEEVE (not sleeve-gauntlet combo). The deal breaker for me was that even the small was way too long (much longer than the small Juzo soft off the shelf sleeve, and somewhat looser). I'm petite (5'3", 105 lbs), but I don't have ridiculously short arms and I don't know if they changed the length, but I would call and ask how LONG the combo is in the size you are considering. Brightlife staff are very nice on the phone (Nancy literally took gloves out of boxes and measured the lengths of each fingers for me), , and they have an excellent return policy. KS
Here is the review I wrote for BrightLife.
"Here's my take on the "in house" sleeve you sent me. Overall, I would give it a 3 out of 5.The fabric is quite nice. It's a bit softer and smoother than the juzo soft and clearly nicer than the off the shelf or custom jobst class 1 or 2 sleeves. Because the sleeve's fabric is smoother, clothing doesn't cling to it as much, so clothing drapes better.
For me, the small sleeve is much too long and somewhat too loose, especially at the wrist. Also, I don't like that the knit changes at the wrist to a ribbed knit. It's hard for me to say whether the sleeve would stay up because it is too long and loose. I personally like a silicon band, which this doesn't have. On the other hand, there are times when a silicon band can irritate (hot days, swimming). It would be nice to have the option of a silicon dot band (like juzo has).
To me, one of the real selling points of this sleeve is its affordability. For women who pay out of pocket, this matters. It would be nice to have an inexpensive sleeve that one didn't have to worry about for swimming or doing messy jobs like gardening."
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HEY.... IT'S HUGZ FOR EVERYONE! You all get hugz for tolerating the scorching sun, exercising LE's butt right off this planet, and hugz just because your GREAT!
Skimmed some of your posts and you made me laugh! wish I could read them all but I am getting ready to go away.
So I didn't get much exercise in cause I had the in-laws,outlaws,cats, dogs, people,kids and various things disrupt my routine. We had so much fun with my company and they were a great help but it took me two weeks to prepare for them and when they left I ended up in emerg with a sore heart. I'm getting to old for this. Heart is fine, just too much going on..Lesson learned. MUST SLOW DOWN and not worry about being such a clean freak and a perfect hostess. I have spent 3 days in bed until 12, just resting.
OK, I'm back to normal. So I signed up for using the therapy pool at the hospital. The hospital charges 10 bucks for a 45 min lesson. YIKES! They stuck me in with the Arthritis exercisers cause they didn't know what to do with a LE girl. I just followed along because it was light exercises and ad-libed when I wanted to. I signed up for 4 weekly lessons but will make it only to 3.
What do you think of the therapy pool temp? It is 98 degrees. Is this to hot for LE? I think Tidhar method recommends 31-33 celceius which is a few degrees cooler.
Also I can't remember if Nitocris posted any you tube on Tidhar doing the exercises in the pool when she posted about this method. Did she? Cause I would like to view them.
One thing daily I did was I dismissed myself from my visiting company and put DH in charge of looking after them and went to the public pool to help my LE for 1 hour and then rushed back home. Everyone was supportive of this, so I happily went, but I did feel guilty anyway for leaving them. grrrr. I hate guilt.
Going to Idaho for a week next Monday. I hear it is 90 degrees, Don't know what I will do because I like it about 75 and that's it! I am sure I will remove my hot sleeve/glove and strangle anything that crosses my path. I get frustrated in the heat. I just got to figure out how to get my meat out of the heat!
Hip is a wee bit better but only because I baby it. Will go for a 1/2 slow walk today.
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Carol--I wonder why the sleeve/gauntlet combo you are considering is so cheap? I moved from custom Jobst to off the shelf Juzo soft. The Juzo dries very quickly but cost is about $50 and gauntlet is about $17. It seems to give me enough compression. I don't know if they have a combo or not. If you try the allegra let me know what you think.
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Becky, I like your new pic, looking chicky!
I wore the juzo soft (got the tye dye ones from brightlifedirect) off shelf sleeve and gauntlet while my company was here, I found the gauntlet wanted to creep down off my knuckles and then a wrinkle at my thumb web. I have short fingers and hand so I can't figure out why this is gauntlet is short on me. Do you find that Becky?
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I logged just under 8,000 steps yesterday. I got more steps in while travelling than once I arrived at destination! Jogging and walking in place at home last night while friends went to backyard cookout. I knew I wouldn't be able to take cover in AC so I passed. I got the card table with all my stuff set up. A little swollen by bedtime, same this morning. Wearing my sleeve and glove. Need to do MLD.
My pedometer seems to work accurately for walking in place, jogging, jumping jacks, and even when I do certain leg exercises.
Slept in but went for a walk with friends around their neighborhood at 11am, about 1 1/2 mi. Way too late to be doing this, but it was "only" 84 and wasn't going to get any better! Going to find a supermarket and big box store to walk around later.
Becky, my friend said he recently discovered Cherokee Dam and thinks it's nice - he mentioned those steps at the end and how he makes himself go up and down a couple times. He has to go on the road for work and stops at different places to hike at lunch. House Mtn, Panther Creek State Park, Norris Dam, Cumberland Gap Nat'l Park are some of the other places he's been.
Will be in touch in a little while! Trying to get a few more steps in before my friends' guests arrive for dinner . . .0 -
Tina, I missed out where you are. Are you in another state again or at home? I just keep picturing you on a train jogging with passing by cars! 0
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Hugz, I was home for five days, but now I am in Knoxville, TN visiting friends. Looking forward to meeting Becky tomorrow!
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KS, Thanks for the information on the Allegra sleeve/gauntlet combo. I sent Brightlife an email to ask some questions based on your helpful observations.
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Heavy rain and wind made me think twice about heading out in car to walk in big box store. Stayed at house and completed just under 4,000 steps by jogging and walking. Total steps for day is 11,123. I'm ready for MLD and some sleep!
Hope everyone is doing well.0
